Costs of Autism Spectrum Disorders in the United Kingdom and the United States | Autism Spectrum Disorders | JAMA Pediatrics | JAMA Network
[Skip to Navigation]
Access to paid content on this site is currently suspended due to excessive activity being detected from your IP address Please contact the publisher to request reinstatement.
American Psychiatric Association.  Diagnostic and Statistical Manual of Mental Disorders.5th ed. Arlington, VA: American Psychiatric Association; 2013.
Taylor  B, Jick  H, Maclaughlin  D.  Prevalence and incidence rates of autism in the UK: time trend from 2004-2010 in children aged 8 years.  BMJ Open. 2013;3(10):e003219.PubMedGoogle ScholarCrossref
Perou  R, Bitsko  RH, Blumberg  SJ,  et al; Centers for Disease Control and Prevention (CDC).  Mental health surveillance among children: United States, 2005-2011.  MMWR Surveill Summ. 2013;62(suppl 2):1-35.PubMedGoogle Scholar
Newschaffer  CJ, Croen  LA, Daniels  J,  et al.  The epidemiology of autism spectrum disorders.  Annu Rev Public Health. 2007;28:235-258.PubMedGoogle ScholarCrossref
Ganz  M. The costs of autism. In: Moldin  S, Rubenstein  J, eds.  Understanding Autism: From Basic Neuroscience to Treatment. Boca Raton, FL: CRC Press; 2006.
Knapp  M, Romeo  R, Beecham  J.  Economic cost of autism in the UK.  Autism. 2009;13(3):317-336.PubMedGoogle ScholarCrossref
Peacock  G, Amendah  D, Ouyang  L, Grosse  SD.  Autism spectrum disorders and health care expenditures: the effects of co-occurring conditions.  J Dev Behav Pediatr. 2012;33(1):2-8.PubMedGoogle ScholarCrossref
Amendah  D, Grosse  S, Peacock  G, Mandell  D. The economic costs of autism: a review. In: Amaral  D, Dawson  G, Geschwind  D, eds.  Autism Spectrum Disorders. New York, NY: Oxford University Press; 2011.
Department for Education.  Children in Need (CIN): Disabled Children and Service Use. London, England: Department for Education; 2005.
Emerson  E, Baines  S.  The Estimated Prevalence of Autism Among Adults With Learning Disabilities in England. Lancaster, England: Learning Disabilities Observatory; 2010.
Birenbaum  A. In the Shadow of Medicine: Remaking the Division of Labor in Health Care. New York, NY: General Hall; 1990.
Lakin  K, Doljanac  R, Byun  SY, Stancliffe  RJ, Taub  S, Chiri  G.  Factors associated with expenditures for Medicaid home and community based services (HCBS) and intermediate care facilities for persons with mental retardation (ICF/MR) services for persons with intellectual disabilities.  Intellect Dev Disabil. 2008;46:200-214.PubMedGoogle ScholarCrossref
Brugha  T, Cooper  SA, Kiani  R,  et al.  Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey. London, England: The Health and Social Care Information Centre; 2012.
Liptak  GS, Stuart  T, Auinger  P.  Health care utilization and expenditures for children with autism: data from U.S. national samples.  J Autism Dev Disord. 2006;36(7):871-879.PubMedGoogle ScholarCrossref
Cidav  Z, Marcus  SC, Mandell  DS.  Age-related variation in health service use and associated expenditures among children with autism.   J Autism Dev Disord. 2013;43(4):924-931.PubMedGoogle ScholarCrossref
Croen  LA, Najjar  DV, Ray  GT, Lotspeich  L, Bernal  P.  A comparison of health care utilization and costs of children with and without autism spectrum disorders in a large group-model health plan.  Pediatrics. 2006;118(4):e1203-e1211.PubMedGoogle ScholarCrossref
Synergies Economic Consulting.  Economic Costs of Autism Spectrum Disorder in Australia. Brisbane, Australia: Synergies Economic Consulting; 2011:1-144.
Department for Education.  Children With Special Educational Needs 2011: An Analysis. London, England: Department for Education; 2011.
Jacobson  J, Mulick  J, Green  G.  Cost-benefit estimates for early intensive behavioral intervention for young children with autism—general model and single state case.  Behav Interv. 1998;13:201-226.Google ScholarCrossref
Chambers  J, Shkolnik  J, Perez  M.  Total Expenditures for Students With Disabilities, 1999-2000: Spending Variation by Disability. Washington, DC: American Institutes for Research in the Behavioral Sciences, United States Department of Education, Office of Special Education Programs; 2003.
Chambers  J, Parrish  T, Harr  J.  What Are We Spending on Special Education Services in the United States, 1999-2000? Washington, DC: American Institutes for Research in the Behavioral Sciences, United States Department of Education, Office of Special Education Programs; 2004.
Cone  AA. Fact Sheet: Supported Employment. Richmond: Virginia Commonwealth University Rehabilitation Research and Training Center on Supported Employment; 2008.
Järbrink  K.  The economic consequences of autistic spectrum disorder among children in a Swedish municipality.  Autism. 2007;11(5):453-463.PubMedGoogle ScholarCrossref
Järbrink  K, Fombonne  E, Knapp  M.  Measuring the parental, service and cost impacts of children with autistic spectrum disorder: a pilot study.  J Autism Dev Disord. 2003;33(4):395-402.PubMedGoogle ScholarCrossref
Cidav  Z, Marcus  SC, Mandell  DS.  Implications of childhood autism for parental employment and earnings.  Pediatrics. 2012;129(4):617-623.PubMedGoogle ScholarCrossref
National Autistic Society.  Autism and Asperger Syndrome: Some Facts and Statistics. London, England: National Autistic Society; 2012.
Howlin  P, Alcock  J, Burkin  C.  An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome.  Autism. 2005;9(5):533-549.PubMedGoogle ScholarCrossref
Centers for Disease Control and Prevention.  Prevalence of Autism Spectrum Disorders: Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Atlanta, GA: Centers for Disease Control and Prevention; 2012.
Baron-Cohen  S, Scott  FJ, Allison  C,  et al.  Prevalence of autism-spectrum conditions: UK school-based population study.  Br J Psychiatry. 2009;194(6):500-509.PubMedGoogle ScholarCrossref
Fombonne  E.  Epidemiological surveys of autism and other pervasive developmental disorders: an update.  J Autism Dev Disord. 2003;33(4):365-382.PubMedGoogle ScholarCrossref
Barrett  B, Byford  S, Sharac  J,  et al; PACT Consortium.  Service and wider societal costs of very young children with autism in the UK.  J Autism Dev Disord. 2012;42(5):797-804.PubMedGoogle ScholarCrossref
Curtis  L.  Unit Cost of Health and Social Care 2011. Canterbury, England: Personal Social Services Research Unit, University of Kent; 2011.
Organisation for Economic Cooperation and Development.  PPPs and exchange rates. Published 2012. Accessed December 5, 2012.
Office of National Statistics.  Annual Survey of Hours and Earnings. London, England: Office of National Statistics; 2011.
Shavelle  RM, Strauss  D.  Comparative mortality of persons with autism in California, 1980-1996.  J Insur Med. 1998;30(4):220-225.PubMedGoogle Scholar
Treasury  HM.  The Green Book: Appraisal and Evaluation in Central Government. London, England: Stationery Office; 2004.
Ganz  ML.  The lifetime distribution of the incremental societal costs of autism.  Arch Pediatr Adolesc Med. 2007;161(4):343-349.PubMedGoogle ScholarCrossref
Kogan  MD, Strickland  BB, Blumberg  SJ, Singh  GK, Perrin  JM, van Dyck  PC.  A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006.  Pediatrics. 2008;122(6):e1149-e1158.PubMedGoogle ScholarCrossref
Ham  C.  Money can’t buy you satisfaction.  BMJ. 2005;330(7491):597-599.PubMedGoogle ScholarCrossref
Roux  AM, Shattuck  PT, Cooper  BP, Anderson  KA, Wagner  M, Narendorf  SC.  Postsecondary employment experiences among young adults with an autism spectrum disorder.  J Am Acad Child Adolesc Psychiatry. 2013;52(9):931-939.PubMedGoogle ScholarCrossref
Kim  YS, Leventhal  BL, Koh  YJ,  et al.  Prevalence of autism spectrum disorders in a total population sample.  Am J Psychiatry. 2011;168(9):904-912.PubMedGoogle ScholarCrossref
Peters-Scheffer  N, Didden  R, Korzilius  H, Matson  J.  Cost comparison of early intensive behavioral intervention and treatment as usual for children with autism spectrum disorder in the Netherlands.  Res Dev Disabil. 2012;33(6):1763-1772.PubMedGoogle ScholarCrossref
Mandell  DS, Xie  M, Morales  KH, Lawer  L, McCarthy  M, Marcus  SC.  The interplay of outpatient services and psychiatric hospitalization among Medicaid-enrolled children with autism spectrum disorders.  Arch Pediatr Adolesc Med. 2012;166(1):68-73.PubMedGoogle ScholarCrossref
Mandell  DS.  Psychiatric hospitalization among children with autism spectrum disorders.  J Autism Dev Disord. 2008;38(6):1059-1065.PubMedGoogle ScholarCrossref
Felce  D, Perry  J, Romeo  R,  et al.  Outcomes and costs of community living: semi-independent living and fully staffed group homes.  Am J Ment Retard. 2008;113(2):87-101.PubMedGoogle ScholarCrossref
Shattuck  PT, Grosse  SD.  Issues related to the diagnosis and treatment of autism spectrum disorders.  Ment Retard Dev Disabil Res Rev. 2007;13(2):129-135.PubMedGoogle ScholarCrossref
Hyman  SL, Johnson  JK.  Autism and pediatric practice: toward a medical home.  J Autism Dev Disord. 2012;42(6):1156-1164.PubMedGoogle ScholarCrossref
Original Investigation
August 2014

Costs of Autism Spectrum Disorders in the United Kingdom and the United States

Author Affiliations
  • 1Personal Social Services Research Unit, London School of Economics and Political Science, London, United Kingdom
  • 2Center for Mental Health Policy and Services Research, University of Pennsylvania, Perelman School of Medicine, Philadelphia, Pennsylvania
  • 3Center for ASD Research, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
JAMA Pediatr. 2014;168(8):721-728. doi:10.1001/jamapediatrics.2014.210

Importance  The economic effect of autism spectrum disorders (ASDs) on individuals with the disorder, their families, and society as a whole is poorly understood and has not been updated in light of recent findings.

Objective  To update estimates of age-specific, direct, indirect, and lifetime societal economic costs, including new findings on indirect costs, such as individual and parental productivity costs, associated with ASDs.

Design, Setting, and Participants  A literature review was conducted of US and UK studies on individuals with ASDs and their families in October 2013 using the following keywords: age, autism spectrum disorder, prevalence, accommodation, special education, productivity loss, employment, costs, and economics. Current data on prevalence, level of functioning, and place of residence were combined with mean annual costs of services and support, opportunity costs, and productivity losses of individuals with ASDs with or without intellectual disability.

Exposure  Presence of ASDs.

Main Outcomes and Measures  Mean annual medical, nonmedical, and indirect economic costs and lifetime costs were measured for individuals with ASDs separately for individuals with and without intellectual disability in the United States and the United Kingdom.

Results  The cost of supporting an individual with an ASD and intellectual disability during his or her lifespan was $2.4 million in the United States and £1.5 million (US $2.2 million) in the United Kingdom. The cost of supporting an individual with an ASD without intellectual disability was $1.4 million in the United States and £0.92 million (US $1.4 million) in the United Kingdom. The largest cost components for children were special education services and parental productivity loss. During adulthood, residential care or supportive living accommodation and individual productivity loss contributed the highest costs. Medical costs were much higher for adults than for children.

Conclusions and Relevance  The substantial direct and indirect economic effect of ASDs emphasizes the need to continue to search for effective interventions that make best use of scarce societal resources. The distribution of economic effect across many different service systems raises questions about coordination of services and sectors. The enormous effect on families also warrants policy attention.